UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

Good to get a meeting with the actual responsible minister in the current government. I think all the dealings since Sajid Javid moved on from Health Secretary have been at official level. I

I was a junior official a couple of decades ago in a team where we had a couple of meetings to brief Stephen Timms during his previous stint as a Minister. He struck me as a decent guy at the time. I am hopeful he will be able to see that the status quo is not acceptable.
 
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ME Association:
The official minutes from the first joint ME and Long Covid APPG meeting are now available!

https://appgme.co.uk/meetings/minutes-for-appg-meeting-14-may/

Stephen Timms, Minister for Social Security and Disability, joined the first part of meeting which focused on the Government's proposed welfare reforms.

Attendees raised serious concerns regarding the impact the proposed reforms, citing evidence from the recent survey, developed by Long Covid Support, Action for ME, ThereforME, and ME Local Network.

Jo Platt MP, Chair of both APPG's also referenced her own lived experience when outlining these concerns.

Read more here: https://meassociation.org.uk/8kfm

Thank you to those who attended the meeting, and we will share an update soon regarding future meetings.

#pwME #MECFS #MyalgicEncephalomyelitis #APPGonME #APPGonLongCovid

 
Dolphin said:
ME Association:
The official minutes from the first joint ME and Long Covid APPG meeting are now available!

https://appgme.co.uk/meetings/minutes-for-appg-meeting-14-may/

Stephen Timms, Minister for Social Security and Disability, joined the first part of meeting which focused on the Government's proposed welfare reforms.

Attendees raised serious concerns regarding the impact the proposed reforms, citing evidence from the recent survey, developed by Long Covid Support, Action for ME, ThereforME, and ME Local Network.

Jo Platt MP, Chair of both APPG's also referenced her own lived experience when outlining these concerns.

Read more here: https://meassociation.org.uk/8kfm

Thank you to those who attended the meeting, and we will share an update soon regarding future meetings.

#pwME #MECFS #MyalgicEncephalomyelitis #APPGonME #APPGonLongCovid

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Just watched Chris Ponting's presentation. He seemed genuinely angry, and quite right too. A very good speech in my opinion and always very glad to have him in our corner.
 
He is quite right of course. Transcribed some salient quotes.

Chris Ponting said:
"There is no strategy for funding longcovid or ME research in the UK."

"ME and longcovid research turns in a vicious cycle, not able to build on previous research foundations to propose future experiments."

"The total economic burden of ME in the UK is estimated at over £3.3 Billion each year, if 1% of this £33 Million were to be spent on ME research annually then to break even you would only need us scientists to develope approaches that return 1% of people with ME back to economic productivity."

"Break the current vicious funding cycle and ensure that all people with ME receive the proper care and diagnoses they deserve."
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Action for ME letter to Wes Streeting signed by APPG members. September 2025

Edited to add:
Actually, it was vitally important that the Medical research council set up a program of research on all aspects, including commissioned, 20 years ago (as recommended by the government chief medical officers in his report of 2002).
 
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Eleanor said:
Would anyone be able to copy and paste the text of the letter? It's blanked out for me (probably because my browser blocks Twitter trackers etc)
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Dear Wes,
Concerns Regarding ME/CFS Strategy in the Final Delivery Plan
As Members of Parliament and Champions for Action for ME, we are writing to express our collective concern about the absence of a strategic approach to biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as part of the Final Delivery
Plan - ME/CFS are debilitating and affect an estimated 1.3 million people in the UK.
Despite its scale and impact, ME remains severely underfunded and poorly understood. There are currently no diagnostic tests or effective treatments. Research activity is limited, fragmented, and lacks the coordination necessary to deliver meaningful progress. This is particularly troubling given the availability of valuable research assets such as the UK Biobank and DecodeME, and the clear overlap with the growing phenomenon of Long Covid. Evidence suggests that up to half of people with Long Covid are experiencing symptoms that closely mirror those of ME.
The UK is rightly recognised for its world-leading life sciences sector and yet this strength has not been directed toward solving ME, which continues to leave millions without answers or hope. In 2017, ME was estimated to cost the UK economy £3.3 billion a year. Adjusted for inflation and revised prevalence estimates, that figure is now thought to exceed £20 billion annually, largely due to lost productivity and the pressures placed on carers and the health system.
We believe there is now a clear case for a national, coordinated approach to ME and post-infectious disease research. A dedicated hub would help unlock scientific breakthroughs, attract long-term investment and ensure that patients, clinicians and researchers are working together to build a future with effective diagnosis and treatment.
Will you agree to meet with Action for ME to discuss these concerns and explore how the Department can support a more strategic response?

Yours sincerely,
John Milne MP
Member of Parliament for Horsham
Graeme Downie MP
Member of Parliament for Dunfermline and Dollar
Monica Harding MP
Member of Parliament for Esher and Walton
Max Wilkinson MP
Member of Parliament for Cheltenham
Steve Race MP
Member of Parliament for Exeter
Wendy Chamberlain MP
Member of Parliament for North East Fife
Alison Hume MP
Member of Parliament for Scarborough and Whitby
John McDonnell MP
Member of Parliament for Hayes and Harlington
Tessa Munt MP
Member of Parliament for Wells
Baroness Scott of Needham Market
Member of the House of Lords
The Rt Hon, The Lord Bethell Member of the House of Lords
 
Cinders66 said:
Dear Wes,
Concerns Regarding ME/CFS Strategy in the Final Delivery Plan
As Members of Parliament and Champions for Action for ME, we are writing to express our collective concern about the absence of a strategic approach to biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as part of the Final Delivery
Plan - ME/CFS are debilitating and affect an estimated 1.3 million people in the UK.
Despite its scale and impact, ME remains severely underfunded and poorly understood. There are currently no diagnostic tests or effective treatments. Research activity is limited, fragmented, and lacks the coordination necessary to deliver meaningful progress. This is particularly troubling given the availability of valuable research assets such as the UK Biobank and DecodeME, and the clear overlap with the growing phenomenon of Long Covid. Evidence suggests that up to half of people with Long Covid are experiencing symptoms that closely mirror those of ME.
The UK is rightly recognised for its world-leading life sciences sector and yet this strength has not been directed toward solving ME, which continues to leave millions without answers or hope. In 2017, ME was estimated to cost the UK economy £3.3 billion a year. Adjusted for inflation and revised prevalence estimates, that figure is now thought to exceed £20 billion annually, largely due to lost productivity and the pressures placed on carers and the health system.
We believe there is now a clear case for a national, coordinated approach to ME and post-infectious disease research. A dedicated hub would help unlock scientific breakthroughs, attract long-term investment and ensure that patients, clinicians and researchers are working together to build a future with effective diagnosis and treatment.
Will you agree to meet with Action for ME to discuss these concerns and explore how the Department can support a more strategic response?

Yours sincerely,
John Milne MP
Member of Parliament for Horsham
Graeme Downie MP
Member of Parliament for Dunfermline and Dollar
Monica Harding MP
Member of Parliament for Esher and Walton
Max Wilkinson MP
Member of Parliament for Cheltenham
Steve Race MP
Member of Parliament for Exeter
Wendy Chamberlain MP
Member of Parliament for North East Fife
Alison Hume MP
Member of Parliament for Scarborough and Whitby
John McDonnell MP
Member of Parliament for Hayes and Harlington
Tessa Munt MP
Member of Parliament for Wells
Baroness Scott of Needham Market
Member of the House of Lords
The Rt Hon, The Lord Bethell Member of the House of Lords
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Nice, thank you!
 
New EDM


Sep
100% +•
edm.parliament.uk
Motion text
“That this House welcomes the publication by the Department of Health and Social Care of the Final Delivery Plan on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and recognises the work of officials and the ME community in shaping the plan; notes with concern, that the plan falls short of delivering the meaningful change urgently needed by people with ME/CFS; further notes the absence of a strategic approach to ME research, including the omission of proposals for a dedicated ME research hub; expresses concern that much of the new funding cited, such as for the PRIME (Patients, Researchers and Industry for Myalgic Encephalomyelitis) project, was already secured through existing competitive processes; highlights the lack of sufficient accountability for implementing services and updating medical education in line with the NICE Guidelines on ME; regrets the limited attention given to severe ME and the absence of guarantees on specialist care provision; and calls on the
Government to ensure robust accountability for its implementation, and provide the resources necessary to improve care, support and outcomes for people living with ME/CFS.”
 
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